Spina bifida

Spina Bifida means split spine or open spine Introduction to spina bifida Spina bifida literally means ‘split spine’ or ‘open spine' and is the result of defect in the spinal column that develops before a baby is born. The damage to the spinal cord may not only impair mobility, but can also affect bladder and bowel function. Read more about spina bifida
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Introduction to spina bifida

The severity of the spina bifida depends on where along the spine the opening occurs, the size of the opening, whether skin covers the affected area and whether or not spinal nerves are involved. The specific features of spina bifida vary, but generally the small bones (vertebrae) that make up the spine are not fully formed and may have gaps between them. In severe cases, one or more vertebrae may be missing, exposing the spinal cord. The nerve damage means that the nerves controlling bladder and bowel function are affected.

Most common types of spina bifida

Ranging from most severe to less severe, the most common types of spina bifida are:

  • Myelomeningocele
  • Meningocele
  • Spina bifida occulta

Myelomeningocele

Meningocele

Spina bifida occulta 


Myelomeningocele

Meningocele

Myelomeningocele is where paralysis of the legs is likely and where bladder and/or bowel dysfunction is likely in 80% of cases. It occurs when the damaged spinal cord and nerves protrude through the opening in the spine, along with meninges (membranes that envelop the central nervous system) and cerebrospinal fluid.

 

Meningocele is when the meninges stick out through the opening in the spine in a sac that is also filled with cerebrospinal fluid. In general, meningocele is associated with a lesser degree of disability than myelomeningocele, but bladder and bowel problems are possible.

Spina bifida occulta is fairly common; one in 10 people may have it. Most people will not have any symptoms of disease. However, in about one in 1000 cases, the spinal cord might be trapped between the bones of the spine in the affected region. Some effects may be seen in childhood, such as bladder and bowel problems, or leg pain. 

Prevention of spina bifida

The number of children born with spina bifida is declining due to a combination of more women taking folic acid supplements before and after conception and screening programs to identify the condition early in pregnancy.

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Learn more about spina bifida and bladder problems and how to take care of your bladder

Learn more about spina bifida and bowel problems and how to take care of your bowel

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This information is for educational purposes only. It is not intended to substitute for professional Medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis.

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Learn more about Spina Bifida and bladder problems Spina bifida and bladder problems Children born with spina bifida will generally experience bladder and bowel incontinence to a certain extent, regardless of the spinal level at which the defect occurs. Learn more about spina bifida and bladder problems
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Spina bifida and bladder problems

Most children with spina bifida will experience bladder dysfunction known as neurogenic bladder, which means they have a decreased ability to control their bladder. A neurogenic bladder can lead to either spastic bladder and or flaccid bladder, which is why spina bifida children need a good bladder management programme.

Flaccid bladder

The most common type of bladder dysfunction in spina bifida is flaccid bladder. This is when the bladder overstretches allowing extremely large amounts of urine to be stored before being expelled. The bladder can stretch to hold as much as 2000 ml of urine, which can lead to leakage. Very often when you have spina bifida, flaccid bladder usually occurs in combination with a sphincter muscle that does not open to the urethra.

Spastic bladder

This is when the bladder is very rigid, which means that it is unable to stretch and therefore cannot hold as much urine as normal. On top of this, the bladder may not empty completely, which increases the risk of a urinary tract infection, as the residual urine acts like a pool in which bacteria can grow.

Typical symptoms of spastic bladder are:

  • The need to empty your bladder frequently
  • Uncontrolled leakage
  • Spontaneous emptying

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Learn more about spina bifida and how to take care of your bladder.

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taking care of your bladder with Spina Bifida Taking care of your bladder Continence is a complex issue that has both physical and social elements. For the parents, everyday activities, such as shopping or trips on public transport, can require careful planning so that there is a toilet on the route. How to take care of your bladder
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Taking care of your bladder

Social impact of urinary incontinence

Most children with spina bifida cannot urinate naturally. Your child may not have any control over when he/she urinates and may not be able to completely empty his bladder. Incontinence may also impact the child as well as the family socially. 

For the child, incontinence may lead to social embarrassment and exclusion by peers (e.g. they may miss out on sleepovers and school trips). They may not be able to wear ‘trendy’ clothes if they wear diapers, which also can be restrictive and alienating. Distress and feelings of ‘worthlessness’ can be common in children and young people with incontinence. Parents may also feel distressed as their child's incontinence requires an careful level of planning for everyday activities. Moreover, parents may experience their own feelings of anxiety and embarrassment.

Why is emptying the bladder properly so important?

Urine is excess water and waste products from the body. Urine is produced in the kidneys (1) and then transported to the bladder (2). The urine leaves the bladder via the urethra (3).

If your child’s bladder is not emptied regularly, it can cause infections. These start in the bladder but can move back to the kidneys and cause serious damage – and sadly sometimes even death. Even small amounts of urine left in the bladder can cause infections. As a rule, the bladder should be emptied at least 4-6 times a day.

Emptying your child’s bladder with a catheter

Catheterisation is when you empty the bladder using a thin plastic tube called a catheter which is an easy and painless way to help your child urinate. The catheter is pushed gently into the urethra, where the urine comes out, to empty the bladder. This is done at least 4-6 times a day. Until your child is around 5 years old, you will need to help him empty his bladder. Although it may seem difficult at first, most people soon get used to it.

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Learn more about spina bifida and how to take care of your bladder.

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Frequently asked questions about Spina Bifida Frequently asked questions Find answers to the most commonly asked questions about spina bifida and issues related to bladder and bowel management in children. FAQ's about spina bifida
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Frequently asked questions

*Important Safety Information

Important Safety Information:  Peristeen® empties the bowel by introducing water into the bowel using a rectal catheter. The anal irrigation procedure should always be carried out with care. Bowel perforation is an extremely rare, but serious and potentially lethal complication to anal irrigation and will require immediate admission to hospital, often requiring surgery. The risk information provided here is not comprehensive. To learn more, talk to your healthcare provided to understand the risks and benefits to determine if Peristeen is right for you. This treatment is prescribed by your physician

This FAQ is intended as a general guide meant to help you with typical questions. You should always follow the specific instructions provided by your healthcare provider.

 

Bladder management

Why does spina bifida cause bladder problems?

The bladder, which stores urine, is controlled by the nervous system. Spina bifida causes nerve damage and because of this, bladder function may be affected. Some people find that they need to urinate more frequently or urgently, some experience urine leakage, and others experience difficulty emptying the bladder.

How can bladder problems affect my child’s health?

If your child’s bladder is not emptied regularly, it can cause infections. These start in the bladder but can move back to the kidneys and cause renal damage. Even small amounts of urine left in the bladder can cause infections. Alternatively, if your child cannot control the urge to urinate, he or she may leak involuntarily. Controlling your child’s bladder problems will help them to stay healthy and grow with confidence. Talk to your healthcare provider about how to manage your child’s bladder.

What is a catheter?

The catheter is a slim, flexible tube that is inserted into the bladder through the urethra to allow the urine to drain.

What is clean intermittent catheterization?

Clean intermittent catheterization is an effective bladder management technique based on the regular and complete emptying of the bladder using a sterile catheter. It requires thoroughly washed hands and good personal hygiene. The clean technique should be used by the parent helping the child, the child them self or both in the home setting.
If required, clean intermittent catheterization is typically introduced immediately after birth to prevent kidney damage. Initially the parents will have to do the procedure but when capable, the child should take over the responsibility. However, it's important to remember that users performing self-catheterization should always follow the guidance of their healthcare provider. 

Can I use adult catheters on my child?

Catheters are available in different sizes and lengths including pediatric sizes, which are designed specifically for children.

How often should I empty my child’s bladder with a catheter?

Your doctor or nurse will start by making a bladder emptying schedule for your child. Bladder emptying is normally done 4-6 times each day. You do not need to empty your child's bladder at night if it is done just before bedtime.

Does it hurt my child?

No. Your child might feel some pressure when the catheter goes in. If your child is not comfortable or if it is difficult to slide in the catheter, take a short break. Encourage your child to relax by taking a deep breath or cough. Talk to your doctor or nurse if your child finds it painful.

Can I just empty my child’s bladder in the morning and in the evening?

No. You should follow the schedule your doctor has given you. As a rule, the bladder should be emptied at least 4-6 times a day. Can I give my child less to drink and empty his bladder less often? No. It is very important that your child drinks enough. This keeps the urinary system clean and healthy. 

What if the urine looks cloudy or dark and smells funny?

Your child may have an infection. Talk to your doctor healthcare provider.

What if there is blood on the catheter when I pull it out?

It is normal to see small spots of blood on the catheter. If they are small and your child is not in pain, you should not worry. If there is bleeding or if your child finds it painful, talk to your doctor or healthcare provider.

 

Bowel management
What is bowel irrigation?

Bowel irrigation is where water is introduced into the bowel using a rectal catheter. The water stimulates the bowel and flushes out the stool, leaving the lower half of the bowel empty. Before starting bowel irrigation you should always consult a doctor or a nurse to get proper instructions in use. 

From what age can my child use bowel irrigation?

Your child can start irrigating from the age of 3 years. Bowel irrigation is not recommended for children under 3 years of age. Read more about Coloplast’s bowel irrigation system, Peristeen®.* 

How can my child get started using bowel irrigation?

In order for you child to start,, you need to get a prescription from your GP or nurse. You must also always consult an experienced specialist healthcare professional before starting up the irrigation procedure and you and your child must receive thorough instruction from a healthcare professional before using this product.

If you irrigate, can you still go on holiday? 

Yes, but you should remember to bring your irrigation kit and lots of disposable catheters. They may not sell them everywhere. If you are going to use the kit abroad, use bottled or cooled boiled water in places where the tap water is not safe to drink. Remember in different time zones your child’s body may take a while to get used to a new routine. Different types of food can also affect the bowel.

What should I do if my child leaks between irrigations?

If your child experiences bowel leakage between irrigations, it may be due to insufficient emptying of their bowel due to constipation or hard stool. Alternatively, they may be using too much water during irrigation. Contact your doctor or nurse to help you adapt to your bowel plan. A Peristeen® Anal Plug may help if the problem persists.

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Read more FAQ's on bladder issues. Read more FAQ's on bowel issues.

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Learn more about Spina Bifina and bowel problems Spina bifida and bowel problems Nerve damage can mean that people with spina bifida have difficulty recognizing when their bowel is full and in turn, have trouble controlling the release of stools. This can result in bowel leakage, constipation or a combination of both. Learn more about spina bifida and bowel problems
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Spina bifida and bowel problems

Many people with spina bifida will experience bowel dysfunction known as neurogenic bowel. The feeling of needing to empty the bowel and the movement of stools through the body are controlled by nerves in the spinal cord, which can often be damaged in spina bifida. It means that bowel leakage is experienced in almost 90% of spina bifida cases. A neurogenic bowel can also lead to constipation.

Bowel leakage

Spina bifida and symptoms of bowel leakage:

  • No sensation in the anus and rectum
  • No sensation for the urge to empty the bowel
  • Inability to keep the anus closed 

This results in continuous leakage from the rectum which may cause offensive odors, meaning that people with spina bifida can often experience skin problems and be reluctant to socialize with their peers.

Constipation

Spina bifida and symptoms of constipation:

  • Sensation is intact but the muscles that push the stools out do not work
  • Hard and dry stools 
  • Stools that are painful and difficult to pass
  • Spending a lot of time on the toilet

Typically to a number of unpleasant side effects like bloating, discomfort and severe stomach ache are closely related to constipation. 

Find out more

Products that can help to manage bowel problems include: 

Read more about how to take care of your bowel

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Taking care of your bowel with Spina Befina Taking care of your bowel Most young children with spina bifida rely on their parents to empty their bowels. It is important to find a reliable solution to prevent bowel problems. Bowel irrigation is an effective way to do this. How to take care of your bowel
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Taking care of your bowel

Bowel irrigation is an effective way of emptying the bowel. If you do it regularly, it will make your child feel more comfortable and prevent problems such as bowel leakage and constipation.

What is bowel irrigation?

Bowel irrigation is where water is pumped into the bowel using a bowel irrigation system. The water stimulates the bowel and washes out the stools. The irrigation process takes about 30-45 minutes. Once a routine is established, then after irrigation the bowel is clean and empty for at least one day.

Your role as parents

Until your child learns how to do empty their own bowel, you need to make sure that the irrigation is done correctly and safely. Find a good, regular routine that works and encourage your child to take an interest. Your child will have to do it themselves when they are older. 
If irrigation is not done regularly your child may feel uncomfortable and can suffer from; constipation, infections and/or leakage:

  • Constipation is very uncomfortable, It causes abdominal pain, can affect appetite and may cause sores around the anus.
  • Urinary tract infections are a common side effect of constipation.
  • Leakage happens when the bowel is over filled due to constipation.

The Poo Game

The Coloplast Poo Game is available to help children learn about bowel irrigation. When you feel your child is ready you can use this game to teach about the irrigation system. Please ask your doctor or nurse for more information.

Find out more

Products that can help to manage bowel problems include: 

Read more about how to take care of your bowel

For answers to the most common questions about spina bifida and bladder and bowel issues read more in the FAQ. 

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User stories

Coloplast has compensated these end users to share their product experience. Each person’s situation is unique so your experience may not be the same. Talk to your health care provider about whether this product is right for you.

Watch Frederikke's story

Frederikke is now able to stay overnight with her friends

Since using Peristeen®, Frederikke can concentrate on being a teenager and doing the things young people like to do.

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Frederikke is now able to stay overnight with her friends

Important Safety Information

Important Safety Information:  Peristeen® empties the bowel by introducing water into the bowel using a rectal catheter. The anal irrigation procedure should always be carried out with care. Bowel perforation is an extremely rare, but serious and potentially lethal complication to anal irrigation and will require immediate admission to hospital, often requiring surgery. The risk information provided here is not comprehensive. To learn more, talk to your healthcare provided to understand the risks and benefits to determine if Peristeen is right for you. This treatment is prescribed by your physician. Although many patients benefit from the use of this device, results may vary.

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